Stage 3B (1 week post double mastectomy)

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Bfree413
Bfree413 Member Posts: 5
edited December 2020 in Stage III Breast Cancer

Hi all,

A bit overwhelmed at the moment so close to Christmas...asking for advice, insight, etc.

My name's Brittany. I was diagnosed with Stage 3B inflammatory breast cancer 7/14/20. I'm a newly wed (7/18/20 due to Covid..married 4 days after diagnosis!), Mother of a 10 year old boy. My husband and I also took care of our future by freezing embryos before chemo :)

I just completed 6 rounds of Chemo & HER-2 treatments. (12 months of Her-2.) Tests came back (breast/brain/heart/bone density) negative post chemo- so no further spreading. This allowed the next journey to unfold which was a double mastectomy. I'm 1 week post-op and pain is manageable, but I just came from my follow up appointment with my surgeon ...to some unsettling news.

I was informed that the Chemo was ineffective towards the lymph node region (right side tested positive originally at diagnosis & lymph nodes were also removed.) So while this was terrible news before Christmas, the surgeon did inform us that my Oncologist mentioned that there are other options and treatments available. I have radiation coming up and I was curious what you ladies have to say on this matter. Any insight, help or positivity would be greatly appreciated.

I will attach a few pictures and links below to share a bit of my story.

Happy Holidays and thank you for reading!

Comments

  • hapa
    hapa Member Posts: 920
    edited December 2020

    This is not very much information to go on. Was chemo completely ineffective, as in the cancer in your lymph nodes kept growing? Or was it marginally effective, or were there just scattered cells left?

    Regardless, I don't think it makes much difference in terms of what treatment is next. If you had more than 3 lymph nodes positive after neoadjuvant chemo then usually radiation is recommended. They will irradiate the axilla in addition to your scar and chest wall. You will most likely be switched to Kadcyla in lieu of Herceptin, which is basically a chemo molecule attached to a herceptin molecule. It will cut your recurrence risk in half. You may also be eligible for Nerlynx once that is all done. You don't mention your HR receptor status, Nerlynx is more often prescribed for women who are ER+/PR+. There are lots of treatment for Her2+ BC but those are the ones that are approved for early stage.

    If you make your diagnosis and treatment info public you will probably get better replies.

  • Bfree413
    Bfree413 Member Posts: 5
    edited December 2020

    Apologies Hapa. I went and updated with as much information as I could. The chemo was minimally effective as stated by the pathology results.

    "Final Classification of Chemotherapy Response

    Breast: Residual invasive carcinoma, with probable or definite response to chemotherapy (minimal)

    Lymph Nodes: Metastasis present, evidence of response (minimal)"

    Thank you for your response and insight as to what the next steps will be. I meet with my oncologist and surgeon next week to set up Radiation. As for additional treatments I am unaware of until we sit down and discuss.

    I appreciate you taking the time to reply, thank you

  • hapa
    hapa Member Posts: 920
    edited December 2020

    Have you asked your MO to re-do receptor testing on the nodes? I had a bit of residual cancer in my breast and nodes and it tested Her2- after chemo and low grade. It made sense that chemo wouldn't do anything to low grade cells.


  • Bfree413
    Bfree413 Member Posts: 5
    edited December 2020

    I have not Hapa but I will ask them to redo receptor testing on the nodes. That does actually make sense now that you mention it, I have no idea why that didn't occur to me. Thank you so much for all of this.

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